Have you ever been an advocate for another human being? Chances are that if you are a parent or have been a caregiver in any form, you have held this role. Advocating for someone else can be one of the most tiresome but necessary jobs to have.
Caregiving for others happens for many reasons; fairness and access to the right type of education due to physical or intellectual disabilities, fighting for a diagnosis within the medical system, or even getting through to an insurance provider to access care are all examples.
When I think of advocating, I believe it begins with learning to stick up for oneself first. At this time, you discover that your voice can be one of the most powerful tools you own. And it can begin at an age.
Perhaps it is at age six on the playground when you want a turn on the swing or at age 12 when a sibling or friend is getting bullied. Or perhaps it occurs at age 30 when caring for a parent.
When I think back on my role as an advocate, I tend to first think of my cancer diagnosis. But if I truly dig a bit deeper, it was age five. A boy in my kindergarten class kept trying to kiss me, and I remember saying “No!” and running towards my friends. I had found my voice. I was advocating for myself. Years later, it was for a younger sibling when girls were being mean and then when my father was diagnosed with a terminal illness. I realize now that the person inside me had already found her voice.
Being unafraid to raise questions to professionals was a pivotal moment in my life. A few weeks before my dad passed away, he was admitted to the hospital. Already without the ability to speak, it was up to his family to do so for him.
This was when the power of having a voice for someone when they could not have one for themselves lit me up inside like a roman candle on the 4th of July.
What was it that I felt so passionate about? In front of me was a team of doctors who had admittedly only studied my dad’s disease for a few minutes in medical school, and I felt empowered enough to teach THEM about ALS (Amyotrophic Lateral Sclerosis). If I hadn’t, my dad would have been uncomfortable and improperly cared for.
Hours later, when my mom and I took a break in the hallway while my dad slept, I saw one of those doctors in the hallway. He approached us and commented on what an intricate, harsh disease my dad was battling. It was his way of acknowledging the power of our ability to advocate on my dad’s behalf. It was justification. It lit a fire inside me that I did not realize I would need in the coming years.
I used to separate the act of advocating from the feeling of being passionate, thinking that it equated to an emotion that would leave my message unheard. I was afraid to get upset, especially as a female. Yet being able to emote while advocating sometimes garners the needed attention.
On two occasions, I recall physicians halting their estimations of what a diagnosis could be and asking for my feedback. Not wanting to play the part of “Dr. Google,” it is difficult to differentiate between what you feel and what you know when you are in pain or discomfort. The emotions of advocating can overtake logical reasoning. When advocating, it is impossible to separate these two. Passion is necessary.
The same can be said for advocating for your child. As the mom to a child with Autism Spectrum Disorder (ASD), there is no roadmap. And unlike diseases, there is no standard, centric list of symptoms for ASD. Yes, there can be a crossover, but as the saying in the autistic community goes, show me one person on the spectrum, and you’ve shown me just that, one person on the spectrum.
Generalizations are untrue. Sensory issues, discomfort, speech delays, food aversions, inflexible thinking, social anxiety, school refusal, etc. There is an endless list. Therefore my fight to help my son navigate a neurotypical world that expects him to conform is also endless.
After my cancer journey began, I was contacted by friends and family who had someone they loved going through a diagnosis of their own. It has been beyond empowering to help others. Most of these people I have never met in person, and they live in other states or countries hours away.
